Living With Alzheimer’s, Chapter Four

“I’m feeling lost and sad.” Bill’s words as he collapsed into a chair in the living room, took off his glasses, and wiped his eyes. We had begun the annual process of turning the house and yard into a Christmas scene. But finding the boxes of decorations and the outside lights we had stashed in the shop after last year’s celebrations was a no-go for him. So was finding the tree. Trying to put a light-up snowman in a window had ended in frustration, with cords strung all over the place and the snowman still not lighting up. I knew that actually hanging the outdoor lights and figuring out how the big tree goes together would be totally out of his range.

Christmas is a difficult time of year for many people for a variety of reasons. For those with early or moderate dementia, turning the house and yard into decorated scenes, increased social activities outside the home, people coming and going from one’s own home, changes in food, and all the hustle and bustle that goes with all of it can very quickly turn what is supposed to be a joyous time of year into a nightmare that makes them almost comatose.

“How about if we go get a smaller tree? Something that maybe will fit on top of a table?” I said. “It will take up a lot less room, and when Christmas is over, we can just put a black plastic bag over top of it and store it in the garage.” After 45 years of ‘hunting’ in fields and forests (being careful we were doing it legally of course) for the perfect real tree, then, when we decided we didn’t want to cut down anymore trees, putting up a large, artificial version, the suggestion of smaller and easier had a distinct appeal for both of us.

Off we went. We found a tree-in-a-pail that was just the right size. And when we got home we both had fun hanging the familiar ‘old’ decorations on the easy-to-reach new tree. We put it on a table in the front-room window and plugged it in (no extra cord required). We also found a large polar bear with blinking LED lights operated by battery. It was placed beside the tree to wink at people in the street. After all, we do live on Bear Place. Other light-up decorations went in other windows, and when the sun went down and everything was turned on, Bill said, “It feels like Christmas now.” We might not have the outdoor display we’re used to having, but the new arrangement is far easier on both of us. And when the holiday is over, it will be sooo much easier to take down and put away.

Yesterday was parcel-wrapping day. “Can I help?” Bill wanted to know. “Sure. Just pick up that pile and put it in that bag.” I am eternally grateful to whoever first came up with the idea to use decorated bags for gifts instead of boxes and wrapping paper. An added bonus if one wants to create bags with a personal flair is that it can provide an afternoon of fun for someone with dementia, too. Brown paper bags decorated with stencils, stamps, drawings or just colored in various ways–anything goes. This year all the troops are coming home. We don’t have to send anything out, so we’re only using bags. Of course, gifts that don’t require wrapping at all might work well, too. Singing a song, telling a story, providing some babysitting, or petsitting, giving a haircut, or a facial, or a shave–alternate choices depend on one’s particular talents and available time, as well as the proximity of the intended recipient.

“When are they coming?” Bill asks at least once a day, every day, as he looks out the window. So every day I tell him, “Not yet. Christmas is still three weeks away. The kids won’t be here until December 23rd,” and he nods and says, “Okay.” I know the question will be repeated tomorrow, but soon it will be the 23rd, and the kids and grandkids will begin to arrive.

While they’re here, we’ll want to be involved in all the fun, but I know it will be important to find some quiet time and space for Bill to rest. (I’m likely going to want the odd nap myself). I’m pretty sure when they go to the arena for a skate, or the swimming pool for a swim, Bill will want to be there. So will I. So perhaps one day we’ll suggest an afternoon movie the others might enjoy, and we’ll stay home and rest. Or they might head out for a walk, and we’ll stay home. Or instead of a boisterous game, I’ll suggest a more quiet, story-telling time.

Meantime, before everyone arrives I need to keep reminding myself our kids are grown. I don’t have to do everything! We can all share the joy of providing food. Baking cookies together is something even the toddlers of the family can get into–sometimes right from their toes to the tip of their nose–with all the gusto of Santa’s Elves.

Everyone finds their own ways to cope with the added stresses ‘holidays’ can put on them. The trick for us will be to keep taking stock, and take measures to mitigate the stress and enjoy the fun. It’s sometimes hard to tell just where Bill’s at, because he isn’t a guy who complains. But if I’m getting too tired, I’ll be pretty sure he is, too. It will show up in various ways. He might be more confused, less able to find his way or perform tasks he normally can do; he might become more withdrawn than he normally is; he might even say he doesn’t feel well. What I hope to do is prevent that and keep us both feeling good.

We’ll both love it when the family gets here. While they’re here, we’ll have a lot of laughs, and a lot of fun. And we’ll both be glad when the dust settles afterward and we’re once again alone in our cozy house, too. For everyone, I wish a happy, safe, and warm Christmas, and New Year!

14 thoughts on “Living With Alzheimer’s, Chapter Four

  1. Shavonne

    Your style is so unique in comparison to other folks I’ve read stuff from.
    Thanks for posting when you’ve got the opportunity, Guess
    I will just book mark this site.

  2. jocelynm Post author

    Hello Carter,
    Thanks for your response. I’m very glad you found this helpful. Are you new to using the internet, or are you caring for someone with dementia? With dementia now being an epidemic world-wide, discussions about the disease, possible treatments, care-giving tips and such like will increase in time. Meantime, we need to do all we can to share whatever information we have that makes the lives of those suffering with it, and the lives of those caring for them, as positive as possible. Perhaps you have some tips, or experiences you’d like to share?
    Best wishes,
    Jocelyn

  3. Jocelyn

    Hi Sidanne. I’m glad you’re celebrating the season, and that Gord appreciates the decorations, even if he doesn’t know the meaning of what’s behind them. It’s the little things, like the jigsaw puzzles and your loving reminders of various events, times, places–whatever has meaning for both of you–that keep the spirit of what life really means alive. Merry Christmas to you and Gord.

  4. Sidanne Switzer

    Hi Jocelyn: I just read your site this morning – and about putting up the decorations with Bill.

    I didn’t even have that problem because Gordy has forgotten all about Christmas or what it even means. He couldn’t even remember what a Christmas tree was. So lots of memory has gone there. He is still loving his “JigSaw” puzzles which is his “Work” now and spends lots of hours piecing them together. Two girlfriends came over on Wednesday night – we had Shepherd’s Pie!!!…. And decorated the tree which Gordy said looked good!

    And I do say “Do you remember….” and I fill in lots of details and then it works and he remembers. I really enjoyed your site and will follow it too!

    One little snowflake at a time…a shovelful is just too much!!!!

  5. Jocelyn

    Warm wishes to you and yours, too, Diana. You have a light of your own that shines very bright for those around you.

  6. Diana Stevan

    Jocelyn, you have a way with words, bringing up right into your home like that. What strikes me is how much love there is between you and Bill. A lifetime, huh? Thank you for shining a light on what it’s like to live with someone you love who is struggling with memory loss. Hard all around. Wishing you and your family a very Merry Christmas and a Happy New Year. And by the way, your blog looks great!!! xo

  7. Janet Smith

    Christmas can be so overwhelming for anyone. It’s important to remember that the season is about Peace and Good Will. Sometime that doesn’t come with lights, ribbons and bows. It’s the spirit, not the trappings that are important.
    God Bless,

  8. Jocelyn

    Your knowledge and guidance is inspiring and very comforting, Coleen. The Alzheimer’s Support Group in Campbell River (held at the hospital the first Thursday of every month, Mitlenatch Room, 7:00 p.m.) is very lucky to have you as our facilitator. Many thanks!

  9. Coleen Carmichael

    I read your blog. It is SO good, Jocelyn. You certainly have a way that speaks into one’s spirit.
    Facts from a webinar on Dementia.
    5.4 million people (U.S. numbers) have Alzheimer Disease
    $150 Billion in yearly costs
    10 million unpaid caregivers
    6th leading cause of death
    A new case every 68 seconds
    The Four Pillars of Alzheimer Prevention:
    Diet – plant based – decreases incidence of Alzheimers by 40%
    Stress management – yoga, meditating etc. Meditation lowers stress and improves brain function and memory. Kirtan Kriya done 12 minutes/day stimulates ¾’s of your brain and activates the frontal lobes – very important.
    Exercise
    Spiritual well being

    Dementia has a ripple effect.
    Symptoms of caregiver stress:
    Depression, exhaustion, frustration

    When a loved one is in care or going into care, ask yourself: Are they SAFE – fairly HAPPY – PAIN FREE? Focus on that to help decrease emotional stress.

    Risk Factors: Age, Genetics, Family history, Lifestyle, Health Issues and Stress

    Stress kills brain cells by the millions because of cortisol (the stress hormone)

    Mid life stress could lead to Alzheimers. Each additional risk factor/stressor increases your risk for developing Alzheimers by 20%.

    Go to http://www.alzheimersprevention.org for the Kirtan Kriya. Last year or so, a church in Comox was doing it. It is simple to learn and the brain scans done on people who practice this and other forms of meditation shows without a doubt it works.
    If you can and have the time, read the book How God Changes your brain by Andrew Newberg, a neuroscientist and Mark Waldman, a therapist. It blew me away.
    Also, something I find really interesting is that some people have been misdiagnosed as having Alzheimer’s disease when in fact they have excessive spinal fluid that exerts pressure on the brain causing similar symptoms.

  10. Jane Wilson

    Just read your blog. Well written and very insightful. I had a manager years ago who was very
    physically challenged and she always used to say “if you want fair, go to fairy land”. Guess she was right, life just isn’t fair. Also reinforces, for me, the idea of enjoying the present.

  11. Jocelyn

    Thanks so much for your comments, Jean. For me the trick is to find ways to simplify things so they are ‘doable’. I remember when I first started going to a caregiver support group and the resource person who was there telling us, “You’re not allowed to say,’ Do you remember?’ ever again.” I do try to remember that, but sometimes do ask Bill if he remembers saying something before, or doing something, mainly I think because of a need to find out what he does recall, or assess where he’s at. Never in front of others though, because that would be very embarrassing for him.

  12. Jean

    My experience with dementia has taught me that helping the person feel as ” normal” as possible does wonders for their morale. Simplifying tasks and questions to be doable and answerable avoids a log of frustration for them. Your patience with hi questions that he repeats every day without reminding him he’s asked you a hundred times avoids embarrassing him. Good on you Jocelyn! He’s lucky to have you. Have a wonderful Christmas!

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